29th June 2009
So I know it has been eons since I did any proper posts and it has been bugging me enormously but here I am, this is top of my list of stuff to do and I'm not allowed to go to bed until we are all updated!
Where to start? Scotland was brilliant, so removed from our reality, exactly what we needed, we drank and ate too much, G got a bit eaten by midges but not too bad. We saw mountains, rivers, islands, lochs (lots!) castles, waterfalls, golden bunnies and G saw a red squirrel and a steam train but not together! We camped in idyllic spots and met a lot of weather! A very good time was had by all.
Just before we went up to Scotland we had a real push to try and get lots of things sorted out so that we could forget about it all while we were away, it was partially successful. We did discover that the letters for the referrals we'd been hassling about had only been sent out a couple of days before we left, taking a massive 7 weeks to get typed, once again not bloody good enough. No wonder we hadn't had any appointments through, I hadn't even been bothering the right people, it was the typists I ought to have been chasing it would seem GGGRRRR! So we had to content ourselves with assuming there would be contact by the time we came home. We also had an email from Dr.Leone (the American Canavans expert) just before we left, she said she had received a letter (YES a letter!) from Dr. Sharples with a very brief report about Rosa, she said going on the scant information that Dr.Sharples had supplied she didn't believe Rosa had Canavans. As you can imagine this completely threw us but the most ridiculous thing was that on this letter, Dr.Sharples hadn't even put an email or direct contact number so Dr.Leone had to contact us and ask us to forward her theories back to Dr.Sharples which was frankly a bit embarrassing. As it turned out once Dr.Leone heard about the genetic blood results there was no doubt about the diagnosis. As you can imagine, we don't have quite so much confidence in Dr.Sharples as we did at the beginning of May when we had that meeting. Today we wrote a stiffish letter of complaint, their tardiness is just not bloody good enough, we are sending copies to Dr.Sharples, Dr.Arend, Dr.Moody and the customer relations manager in the hope that things get a bit less chaotic and to convey the sense of urgency that we can't help feeling but they mostly seem to lack.
So that was that, when we came home we did manage to get an appointment for Rosa's baseline MRS scan (23rd July) and an appointment to speak with Dr.Sharples (24th July) We also had a letter back from the Clinical Genetics Service in Exeter. They had sent us a questionnaire to complete before they'll consider making us an appointment, mostly it seemed aimed at making a diagnosis but I pointed out we already have that, what we really want and need to know is what are our options? As with everything things are ticking and we need to know where we stand in terms of more kids. I've sent the q's off and will phone them at the end of the week and see if that gets me anywhere. We put our housing benefit form in again(3rd time!) before we left and once again they wanted more specific info because a copy of my tax return isn't good enough for goodness sake! So that goes in again tomorrow, 4th time lucky! They did very efficiently give us a blue badge though which is good as it means that we don't have to pay for parking at nursery saving us a couple of hundred pounds a year straight away. We also had a letter back from Little Bridge House the children's hospice, an introductory letter saying they were waiting for Dr's reports and would be in touch when they had heard back (that won't be anytime soon then!) That was a bit of a sad one for me, it's a fab place and service but I don't want it, I don't want to know about it on a first hand basis, I don't want to face that future until I have to.
We also have a bit of a continuing glasses saga which all being well will conclude this week. We went to see the optometrist after reading that Canavans children often suffer from from long sightedness, when they tested her they said she was a bit long sighted, in a normal child they would give it another 6 months to a year and see if it had sorted itself out but in Rosa's case we decided that it is worth trying glasses as they may help with her development. We are initially trying a half strength prescription and if we think it's helping we might increase to full script. The pair that we initially ordered came back the wrong size for her so they decided to order another pair, which also arrived wrong, they should arrive again, this time hopefully perfect this week, we await a phone call. In the meantime we have tried her in the ones we already have and she definitely seems to study things for longer, we'll see, or rather, hopefully she will.
I also finally sent off our family fund request form. This is something that portage told us about, it is a government thing but also a charity? not sure really but it is a pot of money for families of disabled children to use for anything they might find helpful. They cite holidays, white goods and driving lessons as things that they help people with. We have asked for a holiday (can't have too many, Scillies or Italy?!) a freezer so I can make her loads of onion and brassica free meals to freeze and money to build her a proper bed in the van. We'll see what they say, anything would be a bonus. They take about three months to do anything anyway so we'll wait and see.
So I think that might be all the Rosa centred activity up to date, you can understand why I was feeling like our lives revolved around Rosa being ill before we went away and also why we really needed to leave it all behind for a bit, it is so full time.
Appledore festival at the end of May was great, it was great to be doing some work and more to the point selling some work! It was very well received and we sold enough pots to pay the rent and get away for a bit which was perfect, we met and talked to loads of people which was also part of the plan. Because we moved down here and worked right up to due date then have been immersed in world of Rosa since then we hadn't really met anyone professionally or socially and it was a great chance to network and meet some other makers. Definitely a success and although there were a few really tough moments mostly around the to tell people or not dilemma overall it was very positive. We spent a lovely evening on the beach helping (well G helped, Rosa and I not so much!) to fire a kiln with Roop which was ace, wonderful to break our routine and stay up late making fire!
We also had a visit from our dear old Brighton neighbours, lovely afternoon in the garden with sunshine.
Just before we went away we also had a wonderful weekend with old friends becoming their kids earthy parents as opposed to god parents, a great honour. It rained a lot so we were mostly inside but we did all run outside and get baptised as it were, it was a beautiful day.
We have just returned from a double party weekend, Charlie and Low finally got hitched on Friday and what a lovely day that was, the sun shone and there was much love all around. G's dad was 70 on Saturday which was also a great day, sunshine and so much good food!
So really we haven't stopped much in the last couple of months. Through it all Rosa has swung extremely in both directions, we have had some sad hellish days but far more happy or at least not unhappy days. There has been another round of teething going on for the last couple of weeks, but the parties at the weekend seemed to help! Yesterday was just wonderful she spent all day smiling and chuckling which is just the business and pretty much unbeatable in terms of making us feel happy. We do try to really appreciate every happy moment, they are so very precious, wish they could last forever.
She had a great time a nursery today, she is quite a fan of UV light! I guess that means we're more or less up to date. I'm sure there is loads of stuff I've forgotten but but it won't be so long till I write again now I promise!